Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundationwas created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

August 8, 2015

Saturday, August 8, 2015Tonight's picture was taken in July of 2007. While in Boston visiting Peter's family, this cute sailboat came out of storage and the cousins all united around the task of giving the boat a bath. You wouldn't think this could be a task that would be of any interest perhaps to a child. But to my child, such a task was right up his alley. Mattie loved water, a hose, sponges, buckets, and getting wet. Mattie was in the boat, out of the boat, and right in the mix that day.

Quote of the day: Educating the mind without educating the heart, is no
education at all. ~ Aristotle

Though many of Maine's towns are on the Atlantic, they are not like your typical sea side communities. Or what one may think of when we think of visiting the BEACH! Maine's coastline is rugged, rocky, and has little to no sand. You are not going to be finding people walking the beach, lying out in the sun, or playing out in the water. Not only because the coastline doesn't allow for this, but also because the water is frigid. I had the opportunity to put my hand in the water and I can report it was about 62 degrees. Mind you that was warm for here.

We did visit Hendrick's Harbor Beach, which is a lovely stretch of beach that provides sand. I assure you if there is sand, there are people out on it! There were sun bathers, kids digging in the sand, people wadding in the water, and even dogs chasing after sticks in the water.

On this same stretch of beach was this beautiful lighthouse. But if you look closely, you can see the huge rock outcroppings that come into the water. You can clearly see from this photo you are NOT in Florida, North Carolina, or even California for that matter. It is a very distinctive coastline, that automatically orients you to Maine!

I got out of the car to snap this photo, because I liked the fact that this sailboat was passing by this lighthouse looking structure. Being a lighthouse fan, I naturally had to stop. We drove extensively throughout the Booth Bay area today and explored all over. We covered a lot of territory in one day by car. We got a very good feeling for the terrain and the coast.

Booth Bay Harbor has a population of about 2,100 and in the summer months is known for its yachting and tourism. The downtown area is absolutely charming, filled with shops of all kinds, restaurants, and what caught my attention was stores feature hand crafted products. Things made in the USA. Which they are proud to sell and display!

We then visited Pemaquid Lighthouse. Each year, about
100,000 visitors come to explore the park grounds, take in the panoramic view
of the Atlantic and marvel at one of the state's best known icons. It is so
honored that, in 2003, Maine citizens voted to use its likeness to represent
them on the state quarter.

The tower and Keeper's House were constructed in 1827. But
neither lasted long, perhaps because the builder used salt water to mix his
lime mortar. Basically the first lighthouse and keeper's house disintegrated! The second contract to build a lighthouse and keeper's house in this same location stipulated that only fresh water be used. The
new tower, built by stone mason Joseph Berry from was completed in
1835. A new wood frame Keeper's House was added in 1857. I asked and apparently both "new" structures look exactly like their "old" structures!

At about the same time, the tower was upgraded with new
technology: the Fresnel lamp. The beacon that shines today is that same, fourth-order lamp which can be seen 14 nautical miles out to sea.

The lighthouse keepers house.

The climb -- which is about 38 steps! It is the shortest climb we have ever done to get to the top of a lighthouse. But the interior was charming and the view on top was nice but not very memorable.

They allow five people to climb up at a time. This is because it is VERY tight and narrow on top of the lighthouse. In addition, the Fresnel lens is about 500 pounds and there is a weight limit on top.

August 7, 2015

Friday, August 7, 2015Tonight's picture was taken in July of 2007. Mattie was visiting Peter's family in Boston. That day we went out on my brother-in-law's boat with his children. Mattie was posing with my niece and and nephew. Mattie loved an adventure and he particularly loved boats. When Mattie was sick his one dream was that he wanted a boat. Not a toy boat mind you, but a real boat. He really wanted to save his money to one day captain a boat. Now I am sure that would have changed in time if Mattie was lucky enough to have survived, but at age seven that was something he was adamant about and truly wanted!

Quote of the day: A little kindness from person to person is better than a
vast love for all humankind. ~ Richard Dehmel

Today we took a road trip with Peter's parents to Booth Bay, Maine. Which is between Portland and Bar Harbor. This is about a two hour and 45 minute car trip from Boston. However, unlike our busy roads in the DC area, the trip up to Maine was far more peaceful and less congested. I was amazed at the number of tolls, but what always is noteworthy is how friendly people seem to be in New England. They are a very different breed from what I am used to in Washington, DC. Or probably any major city. Where there is great caution to make eye contact and connecting with people in general requires great thought and planning. Here people seem to want to spontaneously talk and engage. This always catches my attention immediately when I am here. We had lunch by the water in Wiscasset, which is nicknamed the "prettiest village in Maine." After which we then visited the Coastal Maine Botanical Gardens. I have visited many botanical gardens, all over the country and the world, but the beauty about visiting different gardens is that you can appreciate each one for its uniqueness and for the flora of the region it wishes to feature. This garden is a must see. In many ways, you have to admire the fact that such an extensive collection is in Maine, which for most of the months of the year it is quite COLD. So in essence in my opinion these plants and trees are hardy, and yet despite the terrain in which they live, their elegance, beauty, and harmony they provide to their visitors is unmistakable.

Here is some history on the Botanical Gardens......After 16 years of planning, planting, and building, the grand opening of Coastal Maine Botanical Gardens was celebrated on June 13, 2007. In 1996, after a thorough search for an appropriate site, Coastal Maine Botanical Gardens purchased 128 acres of pristine land with 3,600 feet of tidal shore frontage in Boothbay. This was possible due to the unhesitating willingness of founders to use their own homes as collateral.

The Botanical Gardens comprises 270 acres of tidal shoreland and more than about 100,000 guests walk through the Gardens each year.

One of the amazing flower features in the Gardens were coneflowers or its botanical name.... Echinacea. There seemed to be flower beds full of them, and attracted to them were honey bees!

What also captured one's attention were the sculptures integrated into the Gardens. This was a special exhibit called, Wind, Waves, and Light by George Sherwood, Sherwood's kinetic sculptures are both highly refined and elegantly simple as they move with each breath of wind. Inspired by nature, his abstract work is reminiscent of flocks of birds, schools of fish, shimmering leaves, waves of light and water. His choice of durable stainless steel reflects color and light brilliantly, and when sited on the landscape, Sherwood’s dynamic sculptures animate their setting and celebrate their place. Five monumental pieces, shown in the Hudson River Park in New York City last year, form the core of this show, with additional new works in a variety of scales. This is sculpture at its best.

I have seen hydrangeas before, but none quite this size. These flowers were as large as a human head! They were gigantic!

Check out this dragonfly! He almost blend into the flower! He was picture perfect. Of course I can't help but think of Mattie when I see these fluttering creatures.

This would have been a Mattie favorite.... the Grasshopper!

I snapped a photo of Peter with his parents today at the Gardens! Right next to Don was this fascinating stone. If you leaned your head inside the stone and hummed, your head vibrated.

As you can see the gardens were beautiful and we had a perfect weather day to tour them!

There were pathways to follow to explore each of the individual gardens and along these pathways are wonderful trees which to me reminds me of a rugged New England coast.

In the Gardens are wonderful water elements. Some have fountains in them and others have ponds with beautiful water lilies. The Gardens made a wonderful impression on us today. The Gardens cater to kid. They give them fairy wings and have special activities geared to children in the "fairy garden." I am not sure Mattie would have appreciated this fairy garden, but he would have gotten a kick out of seeing kids wearing these wings and feeling special!!!

August 6, 2015

Thursday, August 6, 2015Tonight's picture was taken in July of 2007. We took Mattie to Boston that summer to visit Peter's parents. Mattie was five years old and very active! My joke about Mattie was he had two modes: on and off. There really wasn't an in between. Mattie loved going on their tree swing and though he was learning the art of pumping his own legs on the swing, he still needed to be pushed! I of course never went anywhere without my camera, and as you can see, Mattie complied by giving me a nice smile!

Quote of the day: A 'No' uttered from the deepest conviction is better than a
'Yes' merely uttered to please, or worse, to avoid trouble. ~ Mahatma Gandhi

Peter and I flew to Boston today to spend the week with Peter's parents. I am so happy Peter decided to fly. Typically I wouldn't say that, since I do not like airplanes. But the drive to Boston from DC, is super long and can be stressful. Which is not what either of us needs right now, since we are highly stressed out as it is. A 65 minute flight was so much easier! As you can see the views coming into Boston were beautiful!.When we landed at the airport, I went to use the restroom. When I came out, I found Peter talking to a woman. It turns out this woman was on our plane and she recognized Peter. She did not know how, but she knew their paths had crossed before. So she started playing twenty questions with him.... did you go to a particular camp? Did you work for a particular company? Finally did you go to Union College? Of course the answer to the Union College question was YES! She went to college with us and was two years ahead of us. The conversation was innocuous until she brought up children! She asked us if we had any children, because she told us she had two, one of whom was looking at colleges! It is hard to know, EVEN now, how to answer such a question when posed to us. Peter did not want to get into it with her, so he responded no, and I added to his response by saying.... well actually it is a rather long story. Of which she did not skip a beat and did not even pursue what I meant by that! So clearly we did not offer anymore information. But that whole interchange upset me and I carried it with me the rest of the day. Why am I upset? I am upset because answering the question.... do you have children doesn't provide for an easy answer. NOT one people want to hear. In addition, also not having Mattie in our lives is a constant reminder of what we are missing. We can't relate to this woman doing college searches with her daughter. She brought her daughter back to our alma mater, and though I never had plans that Mattie would go to Union College, it would have been a place we would have wanted to show and share with him. We spent the day reconnecting with Peter's parents and catching up over lunch outside. Later in the day we went for a lovely walk around this neighborhood pond. Horn Pond is a 102 acre water body along the Aberjona River. There is a 2.25 mile walking path around the pond and there is something to see at every turn. Literally we saw the following today: turtles, ducks, swans, geese, a snake, cardinals, blue jays, frogs, a piping plover, and a great blue heron.

I snapped all sorts of photos along our walk! This one I know Mattie would have appreciated! It was a mama duck and her baby. Such sightings always caused commentary from Mattie! He felt such pairings reminded him of us.

Cardinals were out in droves along the path! Barbara, Peter's mom, comes to the pond with a Ziploc filled of birdseed. She knows were along the path the cardinals like to hang out. Some are so used to her feeding them, that they come out to greet her and wait to be feed! Like this fellow you see here!

Along our journey we saw several great blue herons! This was one of them! You can't miss these distinctive and prehistoric looking creatures. It was a delightful walk, on an absolutely perfect weather day!

August 5, 2015

Wednesday, August 5, 2015 -- Mattie's cancer was diagnosed as terminal six years ago today.

Tonight's picture was taken on August 6, 2009. The day after we learned that Mattie's cancer was terminal. That day we went back to the hospital to consult with Mattie's doctor about palliative care options, in order to help ease Mattie significant pain. PAIN that he had been having for WEEKS! Pain that should have been dealt with much sooner than it had, but the fact of the matter is no one really could wrap their heads around the fact that Mattie's cancer could come back so rapidly only six weeks off of chemotherapy. Therefore, I have to imagine pain due to cancer wasn't in the forefront of his care team's mind. But it was on my mind. It was on Mattie's mind. So much so that when we finally broke the news to Mattie that his cancer was back, his response was..... "I knew my bone bugs were back, why didn't anyone believe me?" As for this photo, it says a thousand words! Peter and I were separated from Mattie for a period of time to talk with his doctor. Mattie remained with Jenny, Jessie (his art therapists) and Kathleen (in pink, and one of Mattie's wonderful HEM/ONC nurses from the inpatient unit came down to the clinic to support Mattie). After our meeting was over, we walked into clinic to find Mattie and this was when the photo was taken. You can clearly see we look overwhelmed and Mattie was checking out our facial expressions to determine exactly what was going on.

Quote of the day: Nothing is ever really lost to us as long as we remember it. ~ L.M. Montgomery

Today I went to Georgetown University Hospital for a doctor's appointment. I did not pick this date, the doctor's office did! It was the first available date they could give me, and I waited a month for the appointment. Therefore, I took it. Yet in so many ways, returning to the hospital on August 5th, is like returning to the scene of a crime. Sometimes I wish that certain key dates for us actually meant something to everyone in our lives and the world around us. That these dates did not only matter to us. Taking it one step further, I also wish that these dates could be flagged within Georgetown's system! After all Mattie was treated there, our history is there, and one would think moving forward from a psychosocial standpoint what would help one hospital distinguish itself from another are such personal touches. Wouldn't it be nice if in the Hospital's computer database they just knew key/sensitive dates for us, and therefore understood asking us to come to the hospital on those key dates (Mattie's diagnosis date, his terminal diagnosis date, anniversary of his death for example) for medical appointments would be challenging? I don't know, that seems like a no brainer to me. This isn't rocket science, this is just being human, and performing medicine with a heart. While on campus, I snapped a photo of Mattie's memorial stone. I was captured by the way the shadows played on the stone. Because to me it looked like a sun with its rays.

Last night, I included an excerpt from the blog dating back to August 4, 2009. Given that today is the sixth anniversary of Mattie's terminal diagnosis, I included another excerpt from the following day, August 5, 2009. This excerpt sheds further light on the chaos, physical pain, unrelenting advocacy, and deep sadness that we lived with CONSTANTLY for months on end. Such memories unfortunately do not get locked and buried away, they remain with us. Which is why acknowledging anniversaries is not only important but part of grief journey.

Tonight, I write with a heavy heart to let you know that
Mattie's fight is coming to an end. We learned today, after I insisted on an
ultrasound and an abdominal CT scan, that Mattie's cancer has spread back to
his lungs, as well as his liver and stomach. It is everywhere! This is a fast
moving disease in Mattie, because you will remember he had a sternotomy in
June, and every known osteo lung tumor was removed at that point. Almost two
months later, there are tumors everywhere.

Mattie has been complaining of stomach pain since May. In
May, we started running tests for an ulcer, but as many of you know, we did not
get the test results back until last week. Part of me wishes we did an
ultrasound and abdominal CT scan in May, but then again, that most likely
wouldn't have changed the outcome of things. One thing is certain though, I
know my son. I stuck to my convictions that something medically was wrong with
Mattie and that this was the explanation for him not eating and drinking. This
wasn't a psychological issue, and I knew this in my heart of hearts. Clearly
today, medical science confirmed what a mother's love knew all along. I just
wish medical doctors would listen to us more often!

Today, I fought every step of the way to make sure Mattie
not only received an ultrasound, but a CT scan. Mattie's doctors did not feel
he needed both, of course, until a large mass was spotted in the ultrasound. So
in essence Mattie went through an ultrasound (smoothly thanks to Linda, and his
DS player - something he never plays with, but it caught his attention today)
first. I started getting very edgy during the ultrasound, because the tech
asked Linda what type of cancer Mattie had. I thought that was a telling
question to ask during the test and this prompted my immediate attention and
concern. I couldn't shake that question all afternoon. After the ultrasound,
Mattie and I sat outside the hospital in the rose garden and had lunch.
Normally Mattie doesn't want to sit still, but today was different. He had me
telling stories about his baby years. I retold the story of how he was born,
how he learned to sleep, walk, and talk. None of these things came easy to
Mattie, but he learned them, and through these struggles, Mattie and I became
very close. When my mom describes Mattie as an extension of me, she isn't kidding!
This is a fair assessment! The conversation in the garden today was so special,
loving, and priceless moment between us, which I will never forget.
Unfortunately this moment, was disturbed when the doctor called to tell me she
saw a mass in Mattie's liver, and would need to do a CT scan.

Mattie seemed concerned that he had to take an unscheduled
CT scan later this afternoon. He had to drink a contract dye, and then also had
to have one injected through his central line. The prospect of the injected dye
sent Mattie into a state of anxiety. He did not want to do the test, and it
took a great deal of effort and calmness to talk him through the process. Peter
left work today, so he was with me, and Linda also came to provide assistance.
Linda is great at managing the techs, who clearly need managing. This tech had
no empathy or understanding for what Mattie has and continues to go through.
She was in fact annoyed that he wasn't complying with her instructions. Linda
removed the tech from the room, and I basically had to give Mattie a pep talk so
that he would tolerate the test. I told him I knew he was scared, that he did
not want to go through the CT scan, but I had confidence he could do it. I told
him there is nothing he can't do if he puts his mind to it. He eventually
settled down and the test was completed.

When we got home, the doctor called us with the news. She
actually did not want to tell me over the phone, but there was NO way I was
going to wait until tomorrow. Needless to say, Peter and I are devastated. As
you know, I follow the story of Sammie, a young teen with osteosarcoma in
California. She too is dying from this hateful disease, and I always marvel how
her family is managing and supporting Sammie. I always feared that Mattie was
going to die because of the severity of his illness, but to some extent I lived
with some hope. Today the hope within me is dead. I do not know how Peter and I
will handle Mattie's disease progression and pain, nor do I know how you live
without your child? It goes against the laws of nature to see your child suffer
and die before you. Part of me is in shock and not in touch with my emotions
yet. Which makes writing tonight very difficult.

Peter and I spent the evening sitting in silence and
occasionally walking around. Caring for Mattie tonight was truly challenging,
since our minds and hearts are racing. Mattie doesn't know about his disease
progression. I haven't figured out how to proceed with that, so for now, I
would appreciate this not be discussed around Mattie. After all, he gave the
fight of his life this year, and now was supposed to be the recovery time. In
fact, today, he told me he misses walking, and wants to walk again. This whole
day is heart breaking, and I can't get over all we put Mattie through just to
get to the point which we most feared. The words of Sloan Kettering come back
to haunt me, as they always will. Sloan felt that Mattie's disease should NOT
be aggressively treated since he was most likely going to die. Funny, how I
thought that perhaps all our efforts could change the course of Mattie's future.
What I have learned through all of this is we humans control very little. We
only delude ourselves into this false complacency.

August 4, 2015

Tuesday, August 4, 2015 -- Mattie died 308 weeks ago today.Tonight's picture was taken in August of 2009. This was the last month of Mattie's life and he was really struggling. On August 5th, Mattie's cancer was diagnosed as terminal. Mattie had been complaining of intense pain and was unable to eat or drink ANYTHING for weeks! Over a month to be specific. I would tell Mattie's doctors this at each clinic visit, but there would be one reason or another to explain away these behaviors to me. Either Mattie was recovering from high dosage chemotherapy, or he had an ulcer, or my favorite was he was manipulating me and the situation and refusing to eat (so as to have the beginnings of an eating disorder). NONE of these theories made ANY sense to me, and I voiced my distaste for all them. I tolerated the first one for a while, because I had no education on the side effects of chemotherapy and it seemed plausible that it could impact Mattie for a bit of time. But not so significantly that he had NO hunger and couldn't keep down water. It was only after I demanded further testing, did we learn that Mattie's (only six weeks off of chemotherapy) cancer spread to his stomach and his lungs. Which meant that Mattie's situation was terminal, since we had exhausted all treatment options in his care.

Quote of the day: Shared joy is a double joy; shared sorrow is half sorrow. ~ Swedish ProverbPeriodically I like to refer back to the blog and reflect upon our history. August 4, 2009, may have been six years ago, but as I read over part of the posting (which I copied below), the recounting of that moment seems so real to me. However, here is the irony of this. I did not need to read it for it to be fresh in my mind. I can recall that day and many other crises along our journey so vividly. Would it be better to forget about these difficult moments and Mattie's battle with cancer, and only remember the time we had with him in which he was healthy? I don't know. I am sure every parent who lost a child could potentially feel differently about this question. Yet I do know there is a level of guilt that ALL of us who lost a child to cancer live with, which is why I suspect so many of us become advocates. We want to solve a wrong, correct an ill. We will always be captured by the beauty of our child and of course Mattie's memory, but tied to Mattie's memory is his heroic battle with cancer. Not reflecting upon it, and not expressing what he endured and how it impacted us as a family would mean that there is nothing to be learned from our great loss and that Mattie's death serves no meaning. Therefore in celebrating Mattie's life, I believe it is also important to acknowledge and value his cancer journey and what he endured. For what he endured (having two arm bones removed, a leg bone, not being able to walk again, function independently, undergo 9 months of grueling chemotherapy, a sternotomy to remove tumors in his lungs, and be diagnosed with clinical depression, anxiety, and medical traumatic stress), I am not sure the average adult could have managed with any degree of sanity or dignity. An Excerpt from the Blog (August 4, 2009):-------------------------------------------------------------------------------------------As I suspected last night was a hard night. Not that any of our nights are easy, but Mattie's stomach pain was out of control. Tylenol did not work, Kytril (his anti-emetic) did nothing, and forget Prevacid! As the night wore on, I saw that the only relief Mattie was going to get was to break down and give him Morphine. I was so thrilled to have all these pain medications behind us, but somehow, this wasn't meant to be. After about 30 minutes post-morphine consumption, Mattie started to slow down. But he was highly anxious, so I decided to lie next to him and rub his head and arm, until he finally shut off for the night. However, after a four hour ordeal of crying and screaming in pain, I was so worn out, yet so strung out I couldn't sleep! Prior to Mattie's illness, I was the best sleeper, now, I am a walking case study. I can't fall asleep, and even if I am asleep, my body is naturally programmed to wake up every two hours. I thank the PICU very much for this new and unhealthy sleep pattern. I remember Mattie's psychiatrist telling me there is a high correlation between children with cancer, and their parents who develop PTSD. I don't have PTSD, and neither does Peter, but I can see definite aspects of it developing in myself. Being on heightened alert, with constant memories of the tortures of surgery and chemotherapy on your child, are indeed hard things for a parent to live through and survive. After Mattie went to bed, I sat in his room, in the dark, and I couldn't fall asleep mostly because that is when my mind goes into over drive. Fortunately for me, Ann and Alison (our manager of the Mattie fund, and our communications coordinator) e-mailed me about things, which kept me engaged, and frankly I couldn't make it this year without technology. It is through text messages and e-mails, that I keep my sanity. Every e-mail I receive and supportive comment means a great deal to me during these lonely and difficult times.

I went through the day today, very concerned about Mattie's stomach. Mattie is virtually eating nothing. Not just today but for the past few days. Between not eating, and his intense pains, I couldn't stand the stress. I left Mattie's doctor several messages today and we eventually connected in the afternoon. Mattie had his therapy appointment with Dr. Biel, his psychiatrist. Mattie looks forward to these meetings, but I could tell Mattie was annoyed at me when I told Dr. Biel about some of my social concerns regarding Mattie. Dr. Biel always meets with Mattie and I five minutes before his session starts. Today, Mattie couldn't wait for me to leave the room, and he found the concerns I was expressing highly inflammatory. Dr. Biel will be meeting with Peter and I alone next week to discuss Mattie's progress and our next steps.

After his therapy session, Mattie started to complain of pain, was getting anxious about the pain becoming out of control, and insisted on going home. Mind you Mattie had a physical therapy appointment this afternoon but he refused to go. I could have forced him, but I could see he was in no physical or mental state of mind for a productive session. I was so overwrought by all of this, I called Peter. Not that I wanted him to say anything, I just landed ranting on the phone. Basically I was more determined than ever that get to the bottom of this stomach issue, because I can't believe the not eating in Mattie's case is psychological. I feel he has a true physical issue going on.

Later this afternoon, Dr. Snyder, Mattie's oncologist, called me. We spoke for over 30 minutes. She shares my concerns, and is taking an aggressive stance about this. Tomorrow I will call to schedule an abdominal ultrasound for Mattie. If this is inconclusive, we will arrange for an abdominal CT scan. In addition, Dr. Snyder is having us consult with a GI physician, who will determine if a potential endoscopy is necessary. Dr. Snyder doesn't feel as if Mattie has an ulcer, based on where the pain seems to be radiating from. Mattie's pain is on the right side, near his rib cage. Dr. Snyder said that if he had an ulcer, he would feel it more on his left side, where the stomach is. She also feels that we need to rule out issues with Mattie's liver and gall bladder. Though all of this is down right scary, Dr. Snyder told me that if Mattie doesn't start eating soon, he will be placed on a feeding tube. She asked me if it made sense to tell Mattie this. I told her I believe being honest with Mattie, and I stick to that conviction, however, I told her that I don't think this potential threat will inspire Mattie to eat. I told her that I as a parent, can't force Mattie to eat when I believe something is physically wrong with him. If all the testing proves to me that nothing is wrong, then I will deal with the psychological issues around not eating. But for now, I am not taking this stance, because in my heart of hearts I feel something is medically wrong!

Dr. Snyder did say that she is sorry I am dealing with this now, because for most cancer patients who are three months post-chemo, things should be on the upswing. I haven't experienced that high yet and frankly wonder if I ever will. I did appreciate Dr. Snyder acknowledging the emotional side of this, which is one of the reasons I find her so unique to her profession.

August 3, 2015

Monday, August 3, 2015Tonight's picture was taken in August of 2006. Mattie was four years old and as you can see full of spunk and a sense of humor. He took his tunnel, that he typically would crawl through, and decided he wanted to stand up in it and walk up the stairs with this thing around him. It did not work out too well and he did not make it passed the first three steps. At which point Mattie stopped and sat down on the stairs. Naturally I felt that whole scene deserved a photograph. What I also love about this photo was it captured the line up of shoes that we used to have going on our staircase. ONLY Mattie's shoes. Mattie always had three pairs of shoes on the stairs during all seasons. That way when he was ready to go outside, he had one of three of his favorite seasonal shoes to select from before leaving. It worked! Of course our staircase no longer looks like this, but I do remember the days. Quote of the day: Leftovers in their less visible form are called memories. Stored in the refrigerator of the mind and the cupboard of the heart. ~ Thomas Fuller

This afternoon, I had the opportunity to spend some time outside in our garden. I know many people are complaining of the heat and humidity, and the irony is neither bother me! AT ALL! While gardening, something jumped out at me. As it jumped, so did I! Meet our resident cricket. Mattie would have absolutely loved him!

This is what I see from Mattie's window, which is where my desk is located. It has a lovely view into our garden. I refer to this space as my secret garden. Of course we are in the middle of the city, so there is no secret here, but most people around us have NO greenery, so you would be amazed what this tiny green space attracts in terms of birds and butterflies.

Integrated into our garden are symbols of the sun and many butterfly ornaments. Along with the two wonderful fountains that Mattie made for me (with Peter's help!) in 2008 for my birthday. These are birthday gifts I will always cherish.

August 2, 2015

Sunday, August 2, 2015Tonight's picture was taken in July of 2007. Mattie was invited to his preschool friend, Kate's birthday party. She had a gymnastics party! Mattie never did gymnastics in his life, but he jumped right in and participated. Mattie was five years old and by that point really enjoyed socializing with his friends. Which showed the tremendous growth he had made. If you could have observed Mattie even two years before, he would not have engaged AT ALL in a group situation, much less participated in such an active physical, noise generating event. Mattie had overcome so many obstacles from a developmental standpoint even before cancer came into his life. In so many ways, he was a remarkable little fellow!

Quote of the day: A tree is known by its fruit; a man by his deeds. A good
deed is never lost; he who sows courtesy reaps friendship, and he who plants
kindness gathers love. ~ Saint Basil

Peter and I feel like the walking wounded today. We are both extremely tired and wiped out from the week. Though I must admit I have been feeling exhausted for some time now, without ever any down time to catch up on rest. It is jumping from one Foundation event or task to another. So now in my perspective I need mandatory rest. I haven't been talking about my headaches or other issues, but that doesn't mean they do not exist. My medical issues and I co-exist with one another. It seems to just be how life is, post-Mattie's death. Nonetheless, dealing with chronic pain on top of fatigue is overwhelming. So needless to say, I am not writing much today, as I need to start giving my head and eyes a rest from the computer.

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Mattie Passed Away

With heavy hearts, Peter and I said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, but after being given propofol, he finally fell into a deep sleep. My hunch is he did not want to say good-bye to Peter and I, and it took massive amounts of drugs to end his suffering.

Mattie in Summary

Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma.Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008.Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur.Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009.Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working.Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs.PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan.Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.

Washington Post Article on The Mattie Miracle Cancer Foundation!!

An article on Vicki and Pete and the Mattie Miracle Cancer Foundation ran on July 24, 2010, in the Washington Post's Metro section.

Many thanks to Post Reporter Rick Rojas, for doing a great story on us! To read the article on the Post's website, click HERE

Washington Post Article on Reach the Day and Mattie's Blog

In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.

Click HERE for a link to read the article on the Washington Post's web site.

H.R. 2109: CHILDHOOD CANCER SURVIVORSHIP RESEACH AND QUALITY OF LIFE ACT OF 2009

This video highlights some advocacy efforts to provide more effective drugs for childhood cancer patients and access to better care for survivors. This link also provides information on how to contact your representatives to urge them to support this bill.http://www.youtube.com/watch?v=fQY8vxO_quU

Mattie's Channel 9 Story

To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE

Mattie's Situation

Mattie Had Bone CancerMattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children. Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.

All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.

We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.

This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.

Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.